Disability and Feminism: Alyona Lyovina and the “Invagirls” Project

Our first heroes are InvaGirls, a support community for women with disabilities created by women with disabilities themselves. InvaGirls’ manifesto states: “We, a collective of critically thinking women with disabilities, are here to fight ignorance and oblivion. We realized that we didn’t exist anywhere, didn’t fit anywhere. Neither in the camp of women, nor in the camp of disabled women. We are not recognized either in the right or left discourse. We are never acknowledged or present, neither in feminism nor the disability rights movement. We are not supposed to exist yet here we are, somehow we do exist”. 

The social networks of the project show the ordinary life of women with disabilities. Beauty routine, memes about the lack of barrier-free environment, everyday issues and stories of different  ‘inva-girls’, as they call themselves. They don’t just draw the attention of non-disabled people to their problems and needs. Rather, they reach out to others like themselves and emphasize the importance and value of every woman with disabilities and chronic illnesses. 

As the creators of InvaGirls put it: “Yes, we have our differences and special needs, but the conditionally healthy people also have their personal needs and differences”. All this, of course, does not cancel out the problems that women with disabilities have to face every day. Yes, they need physical, material, medical assistance, an accessible environment and legal protection. This is a huge scale of work. And a small self-organized group of people cannot influence all of these things at once. But I really want to know, what value does community create in general especially when external factors cannot be changed? How does the representation of women with disabilities affect society as a whole? How can we all help make women with disabilities feel safer and more comfortable? This is what we discussed with Alena Lyovina,  independent curator and illustrator, founder of the InvaGirls project, artist and feminist activist who fights for the rights of people with disabilities.

Our project is dedicated to supporting women, girls and young women with disabilities. Our mission is to achieve equal rights and opportunities for women with disabilities and other persons with disabilities. In general, we have very little information on how a person with a disability feels, how they experience their disability, what their relationship with society is like.

Our project came about due to a very interesting situation. It was the fall of 2018, and I received an invitation from an acquaintance to participate in a beauty contest for women with disabilities. She (the acquaintance – Editor’s note) presented it as a wonderful uplifting chance for myself, as a person who had just received a disability status and wanted to rediscover my subjectivity, my integrity as a person, as a woman. But at that point I already had a pretty well-developed feminist lens. And I was very offended that only a beauty contest could supposedly rehabilitate and reintegrate a woman who had recently received a disability status. I wanted to do a story on my experience, in collaboration with some journalists for one of the “women’s” media. I posted a request in a group on social networks, saying that I am not a writer, I suggest that someone should join me in this to work it out. In the end, this proposal grew into a whole community initiative and a festival that took place in 2019 which we are very proud of. It was called “Women, Disability, Feminism.” It was also the name of our community.

Disability and gender issues are interconnected. Sometimes they can even be mixed up. And it was important for us to make our problems known among the disabled community. Perhaps the most valuable thing that we gained and received at the festival was unity, community, the opportunity to communicate, to compare our experiences, to get a response. A colleague from another area of work advised me to make a community first. But… Everyone has their own problems. Your butt hurts, your wheelchair broke down, you need to take medication. Then you start thinking of others and realize they have their own problems as well. You think, well, no one needs this community, not even online. Turns out, it’s not like that. We decided that we would make a teaser cartoon that would show the life of a girl with a disability, her environment, and her relatives. Relatives who often bully you, abuse you. The husband who is inert, plays “World of Tanks” for days on end, does not pay attention. At some point, the heroine decides to turn to a friend, just to help her take a bath. Since neither her mom nor husband are willing to help her. Sure, they may be burnt out by now, or maybe they’re just toxic. Anyways, you realize it’s okay to ask for help. Mutual support, it works, it’s out there. Next our heroine, already in the bathroom, where she got with the help of her friend, says: let’s throw a party. And together, they organize this event and become even closer friends. The heroine realizes that friendship is very important to her. At the end of the cartoon, the girl says to her husband: “Listen, you are great and all that, you have done a lot for me, but we need to part”. And he only replies: “Okay.” In this way he confirms that she has made the right choice.

This cartoon is not fiction, it is based on real events. One of the chat members used a walker, but only with the help of her mother, a rather toxic woman. She shared this in the chat room, and another girl replied to her: “I use a wheelchair and don’t depend on anyone”. So our heroine decided to switch to a wheelchair. We ended up making the topic of using a wheelchair sort of official. You have to understand that often for a woman it’s a nightmare come true, it’s embarrassing. It’s embarrassing to be seen in a wheelchair. It’s just awful. Now, 5 years later, more and more people in wheelchairs can be seen on the streets and it has become more accepted. But back then I can assure you it was really embarrassing.

Why was it important for us to “marry” feminism and disability? We did a festival, we held a zine presentation in St. Petersburg, we did concerts, raves, honestly, everything. It was an opportunity to assert ourselves as individuals, to state once again that we can be different, good or bad, ugly or very attractive, we may have all sorts of gender identities or not have any gender identity at all. I have girlfriends on wheelchairs or with other disabilities who are vividly expressive. But what I see on social media is that people with disabilities are very different and express themselves in different ways. 

So to demonstrate all this, we tried to do offline events, to integrate into the feminist community in every possible way, we tried to introduce feminism to women with disabilities and feminists to disability. That goal was at the core of it. But then covid happened. And that was it. It was unclear what to do, how to proceed. So we decided to change our strategy a little bit and go online. To make an online community that would support women with disabilities.

One of my colleagues suggested: let’s promote some positive attitudes, because positivity sells better. We rebranded our social networks. Instead of the excruciatingly long “Women. Disability. Feminism” title, we chose a brief and easy to remember “InvaGirls”. Despite the fact that many of us, as I like to joke, at this point were way too grown up to be called girls, still, the name stuck.

Back then I was visiting many online support groups and I really liked it. People shared problems there and I could do just that, I really enjoyed the mutual support we provided to each other.  I suggested that we start such a group at InvaGirls as well. This is when we invented the crip time format. (Crip time – a reclaimed activist term to describe the special perception of the concept of time and the relationships with time, prevalent in the disabled community. The word crip – from “crippled”- was once a slur, used against disabled people, but later reclaimed by a portion of the disability activist community. – comment from a translator) Crip is a term that describes multiple experiences of disability. Crip time is time that lies outside of the conventional notion of what is an acceptable amount of time that should be spent on a certain task or action. Let’s say the conventional norm is 5 minutes to wash your face, brush your teeth, and then get ready for work. Crip time describes how each person individually understands the daily processes and manages time within their capabilities. For people in wheelchairs, for instance, going to the bathroom takes a long time. Putting pants on and off takes a long time, it’s hard. And if you are also nervous, it takes even longer.

Another important goal of our project is to provide jobs to women with disabilities. Women with disabilities really want to be good, to be effective, you know, it’s specifically important for us. However, this wish of ours can easily be exploited, because when we want to be seen as good and effective we often agree to do work for free. This is really unfortunate. One of the feminist issues is different types of free labor women have to engage in – at home, at work etc. I think it’s helpful to implement feminist lens when talking about labor and employment. You know, it sounds quite like a political program for the development of a socially oriented state. That’s quite a goal. But who’s stopping us from building a comfortable environment, at least in our chat room? For example, we have a section called “yelling booth”, where you can say nasty things about everyone, be judgmental as much as you wish to, and no one will condemn you there, and sometimes people will even support you in your anger. Generally, in the yelling booth everyone will join your flow of this so-called female rage. 

I think it’s a very powerful tool for emancipation. I’m working on my self-confidence, and when I have the amount of self-confidence that I want, I just want to go out and be like, “Well, hey, guys, it’s me. How are you guys doing, I mean, able-bodied guys? You’re good? Oh you’re good, well, I am doing GREAT.” Disability pride is something we really need, I think.

When it comes to the future there is a lot to think about in general. There are a large number of humanistic and philosophical questions. Is disability even necessary? If technical progress or medicine ever reaches the level that allows us to avoid disabled conditions altogether, to not give birth to disabled people, or fully cure any type of disability, will blind, deaf people or, say, people with dwarfism be needed in the world at all? That’s a debatable question. I don’t know the answer. But here is what I know and want now, not in the future, right now: I want to avoid psychological problems related to my disability. I want women with disabilities to be able to receive gynecological care, to be able to decide whether or not to give birth. I want us – women with disabilities – not to be exoticized as some kind of interesting sexual experience, but to just be seen as normal people with different bodies. I want women with disabilities to be in power and to be represented across all spheres. And I don’t want that in the future, I want it right now.

I can even say that we are not different from the most progressive countries. We should only reframe our idea of what the life of a person with a disability should look like. Because now there is a clear paradigm that a person with a disability is better off with their family, where they grew up. The only alternative now is either a nursing home or a psychoneurological institution. That is, there is practically no choice if we are talking about independent, self-sufficient life. We in InvaGirls had an idea that we could find a collective voice and lobby for some laws, promote initiatives. But all of this will happen in the future. For now, we are systematically building support tools. Our initiative remains unique for Russia, there are no alternatives as of now. But even the fact that we do exist is already great.

In the end, I’d like for those of you who find our work important, who listen to me now to tell your friends that you listened to this podcast and learned about such awesome women who created a supportive community. Tell them we are not simply social workers, we’re fun, we’re cool, tell them you want to listen to us more and see us more. Subscribe to our social media. To those female listeners who have a disability and share our values- join our chat room. One last thing – donate money to us so we can work less and dedicate more time to InvaGirls.